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Gold Ribbon Hero: Elin

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Meet Elin, a 6 year old glioblastoma warrior.

In December of 2021, Elin started developing evening headaches and intermittent nausea and vomiting not associated with diarrhea. On the day of her school Christmas party, Elin told her mom she didn’t want to go and that raised a red flag to her mother. Elin’s mother, Elizabeth took her to the emergency room where they ran tests. “They asked me to talk privately in a consultation room and told me the news that no one ever wants to hear.” 

Elin was diagnosed with glioblastoma just eight days before Christmas. “On one hand we felt relieved for a reason for her headaches, but disbelief/shock and overwhelming sadness for the tumor diagnosis and fear for the future.” Her diagnosis showed a devastating pathological tumor which required traveling to different cities for treatment. She’s endured two craniotomies, a port placement, many MRI’s, radiation and chemotherapy. 

Through her treatments, “Elin has not really complained. She was having headaches more consistently prior to her diagnosis but we didn’t fathom the severity. She recovered so well from surgery given how ill she was. She has never questioned why we have done all of the radiation treatments and oral medications. She just knows that we love her and want her to get poked and prodded. She trusts us in this. She has needle and band aid phobia but endures the discomfort and manages to be happy every day.” 

Elin enjoys running and singing. According to her mom, she secretly loves rap music. She is happy to eat a hamburger every day and loves to travel. Currently she is receiving oral chemotherapy agents in a clinical trial for the next 18-24 months. 

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Dealing with a Cancer Diagnosis

In the briefest space of time, in the time it takes to say just four little words, the normal, hectic, everyday life of a family can so easily be turned upside down.  Hearing those four words that every parent dreads–“Your child has cancer”–is a life-altering experience, and indeed not just for parents, but for siblings, relatives, and even friends.  The normal daily routine of the family changes overnight as families cope with the diagnosis, educate themselves on the best treatment options, comfort and care for their sick, scared child while still working, providing for their family, and trying to maintain a semblance of normalcy for siblings.

Handling all of the dramatic changes that a cancer diagnosis requires needs support.  Most of this support comes from family members and friends who can supply meals, care for other siblings, transportation, and emotional support.  At the ACCO, we are dedicated to offering support as well.  We understand just how traumatic a diagnosis of childhood cancer is, and our resources are geared towards helping families navigate this difficult time armed with the information they need to make the right choices for their child and with tools to give their children comfort and succor as they face treatment.

Detailed information from hospitals

The biggest challenge facing parents of a childhood cancer warrior is often getting the right information in a timely fashion, so they can make informed choices about treatment.  The first avenue of information is usually the oncologists and physicians, who can provide detailed information about the cancer diagnosis as well as the appropriate treatment options.  They will help parents navigate the often-overwhelming amount of information on the cancer itself, the different treatment protocols available today, and short-term and long-term effects of each treatment.  Unfortunately, the process of absorbing all of this information, processing it, and knowing what questions to ask can be extremely difficult.  Parents often need to make a number of difficult decisions quickly, signing consent and treatment forms, and making crucial decisions about the best way forward for their child while still processing the initial diagnosis.

The ACCO offers support as well.  We have an extensive on-line library of information dedicated to all forms of childhood cancers, designed to help parents find the information they need when they need it.  We also provide information on current treatment protocols and available treatment drugs, as well as details on how to become involved with clinical trials that may provide a cutting-edge treatment option.  With our free informational resources and wealth of experience, we hope to offer parents access to critical information they need to make critical decisions and give their children the best possible chance of fighting–and beating–this diagnosis.

Dealing with emotions

After receiving a diagnosis of childhood cancer, everything seems to happen within a very short span of time, piling even more stress into an already traumatic and difficult situation.  The hours and days after after the diagnosis can seem like a bad dream or an emotional roller coaster.  All parents whose children are diagnosed with childhood cancer experience some level of stress and emotional pain, but of course every individual and every family handles this experience differently depending on their cultural background, experiences in their lives, and their personal coping styles.  Childhood cancer in the family can be a great shock and the beginning of a testing time for the parents.

The ACCO was founded by a group of parents who have experienced this storm themselves, so they understand how difficult it can be to deal with a cancer diagnosis.  Our extensive resources, offered for free to families facing this crisis, are designed to provide families with all the necessary support, advice, and guidance they need to help their families survive and prosper while battling this dreaded disease.  From informational books and newsletters, to materials designed to offer aid and comfort and make the treatment more comfortable and understandable for children, to on-line support groups composed of parents going through the exact same thing, our goal is to help families know that they are not alone and that we are here to help!

For more information about the American Childhood Cancer Organization call 855.858.2226 or visit: